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Wednesday, June 25, 2014

Down the block, there is a small ALF (assisted living facility) which probably holds no more than 15 beds. It's been there all the time we've lived here. And it's on the route I regularly walk by with Boomer.

Over the years, I have seen so many elderly and disabled people sitting under the small front awning, looking out at the circular drive and brick street, smoking cigarettes or just staring out at the real world. And I always greet them, when passing by, with a "Good morning!" or "Hello!" and sometimes I get a response and sometimes I don't.

Over the years, I've met a few residents. Sometimes, they are remarkable people. I remember, one elderly woman who always came out to pet Boomer and told me her many stories of working with a traveling circus as a animal trainer in the olden days... fascinating stuff. And another, an old man who loved to call Boomer "Smiley" and always had a joke to share or two. And yet another, younger disabled man who loved petting Boomer as he mourned the dog he used to own. But always, the residents, always they strike me as sad, lonely people, abandoned at that ALF, sitting under that awning, just passing the time away until, you know, nursing home, hospice and/or death...

And these residents come and go. And I often wonder, where exactly they go.... and sadly, know, it's probably not good....

These past few months, there's been a new resident, a very ancient old man sitting at the end of the driveway, on a tree stump. And I mean, he looks ancient, I'd guess nearing 100 years old. So frail, so very, very frail. With white hair and huge ears. And, though mobile, he has aphasia -- or if not aphasia, some other form of speech disorder. I say this, because I see him making familiar gestures, so similar to gestures that Bob makes. And I also, I've noticed he doesn't really speak, but seems to communicate mostly in gestures and an occasional word. I always see him making a gesture (two fingers to the lips and a motion mimicking smoking a cigarette) and in that way, he asks passersby for a cigarette. And I have seen, at least one fellow (who I believe is homeless) stop and give him a cigarette, pretty much on a daily basis.

He has made that gesture to me, the smoking gesture, more than once. But, when I see him, I am walking the dog, so basically the only thing in my pocket are poop bags and the house keys. I don't even have a dime with me to give him to send to him to the corner store. But I always take time to tell him "good morning" or "hello" and "how are you?" and make some comment about the weather or such and wish him a "nice day" and "take care" and he always smiles at me with his big toothless grin.

Tonight, as I was walking Boomer on our "last go around" of the day, I saw the old man sitting on his tree stump at the end of the driveway. And the old man stood up and waited for us to pass by.

And I greeted him, as usual, but he put out his hand, as if to tell me to stop.

So I stopped,

And then he gestured, a very familiar gesture, one that Bob does all the time: first, he put his hand on his heart and patted it. And then he gracefully swept his hand toward me. Then he clasped my hand firmly in his hand. Then he brought my hand to his lips and kissed it. Then he gave me that huge toothless grin.

It about broke my heart and it touched my heart. And made me, strangely, happy and sad at the same time. And I realize what a sad, lonely, cruel place this world can be...

But, I tell you, when we get some extra cash around here, I think I'm going buy that guy a whole darn carton of cigarettes from the corner store!

Sunday, June 15, 2014

Speech Therapy app on Bob's IPad
It shows a picture and then says the word when you tap it.

Last month, I posted a blog about Speech Therapy. In that, I mentioned how the new ST was showing Bob how to use an IPad and Bob was really excited about it. No other therapist has ever tried anything like this. But, of course, we don't have an IPad and can't afford one....

A faithful follower of my blog, Dan from Illinois, e-mailed after that blog post and said that he and some folks he knew would love to send Bob an IPad (not brand new but refurbished) and asked me if it needed to be an IPad or if something similar would do, and would an older refurbished one work? I don't know anything about this new technology so told him I would ask the ST at our next appointment.

Lo and behold, we settled our lawsuit before Bob's next ST appointment! So then, I felt it would be a bit greedy to accept Dan's offer. But I also knew that Bob really wanted that IPad and it would be 60-90 days before we see any money and then a lot of other things to buy/take care of first, I mean an IPad will not be first on my list. So, I wrote back to Dan and said if they really still wanted to do this for Bob, I know Bob would be thrilled and promised, after we had some money, I would donate the IPad to some other person who needed it, but couldn't afford it, for speech therapy. And I left it up to Dan.

And Friday, a refurbished IPad was delivered to our door. I got the package and told Bob it was his present and opened it in front of him. He saw it and said, "COOL!" And wanted to use it right away --- though I had to charge it up and after that, I had to figure out how it worked and get it connected to our internet (um 45 minutes on the phone with an IT guy from Verizon---aargh) but got it going and have now downloaded three free speech therapy apps...

Bob working on the IPad

And Bob loves it! Though he has trouble figuring out how to work it (even after I showed him, several times) but I let him go at it (good brain work out!) and he is so enjoying it.

And I want to thank Dan, Dan's sister and his niece and his church, who all donated to make this happen. THANK YOU so very much! And Bob thanks you too! He is really having fun! And it is challenging his brain. I leave the room and hear him talking to the IPad. I love it!

And after this lawsuit and seeing how evil people can be, it is so good to know there are good people out there.

Thank you!

And PS: I know Bob's neck looks terrible in that photo and it is terrible, has gotten so much worse, but he is scheduled for another Botox treatment June 30 after which he's scheduled for "aggressive" therapy. I already talked to his PT about this, and he wants Bob in immediately after Botox and everyday that first week for some serious neck stretching. And I do hope this will help...... fingers crossed!

Thursday, June 12, 2014

We continue to go to both PT/ST two times a week. Bob is really enjoying it, though it's getting harder for me to push him the six blocks there and back in summertime heat! I tell you, I turn up looking like a drenched rat. Somedays, I wonder why I even bother to comb my hair before we leave the house!

Stretching Exercises

At PT, they are working mostly on stretching exercises, these being done manually by the therapist, i.e. the PT bending and stretching Bob's legs as Bob has such limited mobility and they also are stretching his neck. I'm glad to have PT's doing this, as I don't think that physically I would be strong enough to do it.

Then they help Bob with bit of standing (unfortunately Bob has not yet taken a step) and weight shifting while standing. Bob also does about ten minutes on the NuStep, which he enjoys. Each time they transfer him, from wheelchair to NuStep and back, or from wheelchair to exercise mat and back, they do this with a "stand and pivot" maneuver. The therapists tell me that Bob is getting better at the stand and pivot, but to me it still looks like the PT is doing all the work....

Speech therapy is going very well and Bob really enjoys it, though, I can tell he is often very frustrated when he can't find the right word. I must say, I like this therapist more and more and she really has a good rapport with Bob. She is trying to engage Bob in actual conversation, asking him to describe the "walk over" from our house to therapy, i.e. what he saw and felt. A conversation which goes something like this:

ST: Hi Bob! How was your walk over?

Bob: I don't know.

ST: Oh, of course you know! How's the weather out there?

Bob: Um...

ST: Well, it's summer and we're in Florida, so, I'm guessing, it was probably --- HA (making the first sound for the word "hot")

Bob: Hot!

ST: Right! And you came in wearing your sunglasses, so I'm guessing that it was SA (making the first sound for the word "sunny")

Bob: Sunglasses!

ST: Well, that's what you were wearing, but I'm guessing you were wearing sunglasses because the sun was BRRRR (first sound for the word "bright")

Bob: Cold!

ST (laughs): No, not cold. Bright! The sun was bright!

Bob: Bright!

ST: So it was Hot and Bright and what else, Bob?

Bob: I don't know.

ST: Well, how did you feel?

Bob: Hot.

ST: And when you feel hot, you SWW (first sound of the word "sweat")

Bob: Huh?

ST: Sweat. You sweat, right?

Bob: Oh. Right.

ST: So, let's see. It was Hot and Bright and Sweaty. Right?

Bob: Right.

ST: Can you tell me that, Bob? Can you tell me it was Hot, Bright and Sweaty? I'll ask you again. How was your walk over?

Bob: Um... Hot.... Bright... and Cold!

Oh---kay...

But, unlike Bob's last ST who "taught" Bob gestures instead of talking---and I mean this was really weird -- to the point of ridiculous, i.e. why would Bob (who only has one working arm) need to learn a gesture to request a pair of scissors? I mean, what will he be using scissors for? That sounds rather dangerous. I wouldn't give him a pair of scissors if he asked! Or worse, why would Bob (who can't eat) need to learn a gesture for "pass the salt"??? Jeepers. Anyway, this new ST wants Bob to stop relying so much gestures and start talking, instead.

Friday, June 6, 2014

It's been a week since Mediation, and the reality of what happened is finally sinking in. It's weird. I feel like I'm standing with one foot in two very different worlds. The first "world" is life as we know it, i.e. barely squeaking by on Bob's SSD check. The second, a promise of a whole different lifestyle, that's hard to even imagine.

Right now, we have two settlement consultants and a Trusts & Estate attorney, along with our trial attorney all wrapping up the paperwork.

Then we have United Health Care which is demanding to be paid around $165,000 for the cost of Bob's hospitalization after the stroke... of course, we hope we can negotiate that number down a bit....

And our trial attorney's expenses have yet to be tallied up but will be probably hit around $100,000.

All this talk of this kind of money is enough to make one dizzy. I honestly can't even imagine these amounts -- all those zeros! yikes

This past week, our attorney hooked me up with a real estate agent who specializes in working with wheelchair accessibility issues and she's been e-mailing me listings of gorgeous homes with some pretty high price tags. (My biggest hurdle here will be trying to find a house on the corner which I can paint pink-- ha! Otherwise, I'll have to rename this blog!)

In the midst of all this, we receive, in the mail, our six month notification that it's time to re-apply for food stamps. Talk about lurching back into reality. I called our attorney's assistant and asked her how I should handle this, she told me to call the settlement consultant, who advised me to go ahead and re-apply, as, truth be told, we are still poor, all we have is a signed piece of paper, and who knows how long it will take to get our first check in hand. So that paperwork will keep me busy (tearing out my hair, as always) this weekend, but hopefully it will be the last time I have to do it! And I don't know if you ever filled out one of these forms, but here, in our state, it's a 20+ page form and you've got to outline all your monthly medical expenses for the last six months. It's a 2-3 hour job, digging up receipts, etc. And I hate it, and do so much want to get off this welfare treadmill....

Welcome To Our Pink House

About Me

Bob and I were married 09/16/94. He is my soulmate, the love of my life. Bob is an artist and I am a writer.
On 10/20/10, Bob, following his doctor's advice, underwent a carotid endarterectomy. When I left him in ICU that night, he was fine and I thought in good hands. Two hours after my departure, a nurse noted on his chart that Bob's speech was slurred and his right arm was paralyzed. The nurse did not call a doctor. Later that night, the nurse noted that Bob could not move his right arm or leg, still a doctor was not called. The next morning, the nurse noted that he was paralyzed on the right side, a "12" on the Glasgow Coma Scale, disoriented and confused, but no doctor was informed. I arrived at 9:00 a.m. and immediately called for the doctor. He was rushed to surgery. It was 12 hours too late. The CAT scan showed 2/3 of his brain had been damaged. I was told he would not survive. Somehow, he did.
Bob was discharged from the hospital on 12/31/10 and, although the hospital wanted him sent to a nursing home, I brought him home instead. This is the story of our journey since that day. This is also a love story.
(Bob passed away 5/28/15 and I am trying to survive....)